Speaker 1: It was watching my body start to deform by itself,
Speaker 1: like it was doing it to itself, and I couldn't
Speaker 1: do anything to stop it. The most difficult part is
Speaker 1: the pain, the pain and more pain. We're not inside
Speaker 1: their body, so we don't know exactly what they're feeling
Speaker 1: and what they're going through. It takes a lot of courage.
Speaker 1: You don't know if it's going to spread. And so
Speaker 1: I was like, this is absolute fear. How terrifying would
Speaker 1: it be to fight an unknown enemy, one you didn't
Speaker 1: recognize and didn't see coming. What if that enemy was
Speaker 1: coming from within a disease that even doctors couldn't identify.
Speaker 1: Nearly half of all Americans so he from some chronic
Speaker 1: illness and many struggle for an accurate diagnosis. These are
Speaker 1: their stories. I'm Lauren Bright, the checko, and this is symptomatic.
Speaker 1: Athena Garibalini instantly hits you with her infectious energy and enthusiasm.
Speaker 1: She has such verbs for things she's passionate about, including
Speaker 1: her little Bassett hound Homer, a name that combines a
Speaker 1: reference to the Simpsons with her Greek ancestry. He's not
Speaker 1: I wanted a dog that would like lay at my
Speaker 1: feet and snore and just kind of be this cute
Speaker 1: little companion. And he's he's just so funny. He's a clown.
Speaker 1: He keeps me laughing. Athena's warmth is apparent from the
Speaker 1: first time you talked her. Her older sister, Elizabeth, remembers
Speaker 1: her unique ability to connect with others from a very
Speaker 1: young age. She had an interesting personality as a young kid.
Speaker 1: She loved to be around older people. You know, she
Speaker 1: was just outgoing and kind of maybe you could say,
Speaker 1: kind of aloof, you know, but just in a fun way.
Speaker 1: But you wouldn't think to consider the insecurity Athena had
Speaker 1: to face throughout her life, as a string of mysterious
Speaker 1: and painful symptoms consumed so much of her freedom. So
Speaker 1: right around puberty, like thirteen fourteen, I started noticing these
Speaker 1: tiny little pimples appear um in between my thighs, my
Speaker 1: indoor line. I had a couple in my armpits. They
Speaker 1: weren't anything like other than you know, you sweat there,
Speaker 1: you get pimples, right, it's chafing, its friction. So for
Speaker 1: several years this would happen, and sometimes they be a
Speaker 1: little bit bigger than normal, but they weren't anything that
Speaker 1: raised an alarm or caused me to think something is wrong.
Speaker 1: And it's puberty, so your body is constantly morphing and
Speaker 1: changing and poking out in different places. Yeah, these are
Speaker 1: just pimples that are there. They come and go. It
Speaker 1: wasn't anything that made me think that this could be
Speaker 1: long term. But the location of the pimples in the
Speaker 1: armpit and along the groin, or the first sign that
Speaker 1: some unique pattern of irritation maybe at play here. Even
Speaker 1: if Athena wasn't initially able to recognize the unusual nature
Speaker 1: of her body's behavior, when was the first time that
Speaker 1: you realize this wasn't just normal puberty bumps? So at
Speaker 1: one one day, I was having this kind of growing
Speaker 1: pain um in between my cheeks, and eventually I couldn't
Speaker 1: sit down, and so I had to go to a
Speaker 1: doctor because it just wasn't going away. And he told
Speaker 1: me that what I had was a perianal abscess. He
Speaker 1: told me that I would have to go under anesthesia
Speaker 1: and have an incision and drainage for it, and um,
Speaker 1: I had this surgery and I was still kind of
Speaker 1: discovering my body. You know, at twenty one, you're not.
Speaker 1: You don't really have a whole lot of confidence in
Speaker 1: and maturity yet in that sense. And so the surgery
Speaker 1: itself was odd for me, right because I woke up
Speaker 1: upside down and I had netted shorts on that I
Speaker 1: didn't have before um. And so you know, just to
Speaker 1: think that, like, you know, you're going under anesthesia and
Speaker 1: people that you don't know are operating on a body
Speaker 1: part of yours. It's sensitive, uncomfortable both physically and mentally.
Speaker 1: Athena was desperate to do whatever she needed to in
Speaker 1: order to prevent this from ever happening again. I asked
Speaker 1: the doctor, so you know, what is this like? What
Speaker 1: causes this to happen? How can I prevent this from
Speaker 1: happening again? Because I really didn't want to go through
Speaker 1: it again. And he looked at me straight in the
Speaker 1: eyes and said, Perry, anal abscesses are caused by poor hygiene,
Speaker 1: and if you want to stop them from happening again,
Speaker 1: you need to take better care of yourself. He tells me,
Speaker 1: I need to shower twice a day, and he tells
Speaker 1: me that I need to stop scratching myself. And I
Speaker 1: wasn't scratching and I gotta tell you again. I was
Speaker 1: twenty one. Things were a little bit different back then,
Speaker 1: and so I was just naive in my thinking and
Speaker 1: my youth. And he was the doctor, right, so if
Speaker 1: he said I had a hygiene problem, I had a
Speaker 1: hygiene problem, I wholeheartedly believed him. But he didn't elaborate.
Speaker 1: So basically, he's making you feel dirty, Yeah, very much.
Speaker 1: So I went home and I was mortified. Like I
Speaker 1: was thinking about the staff in the outpatient facility that
Speaker 1: I had my surgery in, and all the people that
Speaker 1: I came in contact with, like them thinking I was
Speaker 1: there because I was dirty. And then I thought, oh my, Like,
Speaker 1: I can't talk about this too much with other people.
Speaker 1: Maybe you talk to your mom about it, maybe you
Speaker 1: talk to your sister or a couple of friends about it,
Speaker 1: but like, in general, you don't want to mention pain
Speaker 1: in your groin and your breasts and your armpits. It's
Speaker 1: hard enough being your own advocate as a young adult,
Speaker 1: let alone, while trying to hide something so sensitive. Feeling
Speaker 1: overcome with embarrassment and shame, Athena is desperate for relief.
Speaker 1: Over the next couple of years, I started hyper examining
Speaker 1: my hygiene routine, thinking like, maybe it's the soap I'm using, right,
Speaker 1: so let me change the soap. Maybe I'm not washing
Speaker 1: good enough. So now in these two showers that I'm
Speaker 1: taking twice a day, i am scrubbing extra hard. I'm
Speaker 1: getting all those sweaty areas, Like maybe you need to
Speaker 1: change out my wash. Class More, Elizabeth recalls her sister
Speaker 1: working diligently to change her habits. She's a proactive person,
Speaker 1: so she's always looking for a solution instead of, you know,
Speaker 1: sitting with the problem. She's always looking for a way
Speaker 1: to make something better, fix it. And you kind of
Speaker 1: start going through this process of it's something I'm doing,
Speaker 1: let me test it. I started going to write aids
Speaker 1: a lot, and I would go into their acneile and
Speaker 1: their face wash section, and UM systematically was trying product
Speaker 1: after product after product after product, going maybe this is
Speaker 1: just like acne on steroids, and maybe you'll have an
Speaker 1: area of common. You think, Okay, I've got this, Like
Speaker 1: they stopped coming. I figured out what it is, and
Speaker 1: then you'll get one and then you're right back to
Speaker 1: the drawing board of what is this? The flare ups
Speaker 1: continued no matter what she does to treat them, and
Speaker 1: the abscesses that were once pimples are now starting to
Speaker 1: permanently change her body, to permanently disfigure her. It really,
Speaker 1: for whatever reason, probably a good ten years focused heavily
Speaker 1: on my armpits. Once it started in one armpit, it
Speaker 1: was only a matter of time before it started in
Speaker 1: the other. At one point I had a string of
Speaker 1: five very large black heads right that we're right next
Speaker 1: to each other, And within about a month it had
Speaker 1: formed into this weird looking almost like not of skin
Speaker 1: and tissue, and it was red and it was painful,
Speaker 1: and then it would drain. My arm pits went from
Speaker 1: normal looking to I don't even have the words to
Speaker 1: describe it. Um it was scar tissue. It was all
Speaker 1: of these little holes and ridges and lumps like it
Speaker 1: was different because the skin was starting to get deformed.
Speaker 1: I cannot imagine. And the horror that you must have
Speaker 1: felt like every single morning going into the bathroom, closing
Speaker 1: the door and then checking to see if it's gotten better,
Speaker 1: and it's just getting worse. It was watching my body
Speaker 1: be start to deform like by itself, like it was
Speaker 1: doing it to itself, and I couldn't do anything to
Speaker 1: stop it. A decade goes by and Athena still doesn't
Speaker 1: know or understand what's happening to her body. No matter
Speaker 1: why changed in my life, it was just becoming its own,
Speaker 1: its own thing on my body. It was horrifying. So
Speaker 1: you are trying to not only hide your symptoms, but
Speaker 1: to hide your pain as a direct result of what
Speaker 1: you're experiencing. Yes, I was a manager and I I
Speaker 1: lead a staff, and I would come in having difficulty walking,
Speaker 1: but I didn't want to admit to my staff that
Speaker 1: it was because I had an abscess in my growing
Speaker 1: and I'm trying to make sure that my coworkers can't
Speaker 1: see that. You know, I have drainage on my clothing.
Speaker 1: I'm terrified to sit down in places because if I do,
Speaker 1: like am I going to stay something? Am I going
Speaker 1: to leave a wet spot when I get up? And
Speaker 1: then I'm terrified, like advantages. I wasn't really good then
Speaker 1: at my bandage game, and so like our bandage is
Speaker 1: going to fall out, you know, like they had to
Speaker 1: see this when I would do bandage changes in the
Speaker 1: bathroom at work, like so meticulous about wrapping them up
Speaker 1: so that nobody could even tell what it was so
Speaker 1: much of the focus became not only controlling this disease
Speaker 1: but hiding it. It felt like a full time job.
Speaker 1: And then I'm going home and looking in the mirror
Speaker 1: and crying because no matter what I do, I can't
Speaker 1: stop this from happening. Though keeping her growing concerns very private,
Speaker 1: the physical changes Athena was experiencing were becoming anything but hidden.
Speaker 1: Looking back, Elizabeth recalls her sister's boundaries with her own body.
Speaker 1: There were many years where, you know, we would go
Speaker 1: to the beach and she didn't want to go, or
Speaker 1: you know, just wearing a tank top would be a
Speaker 1: feat because of the scarring and the wounds. How is
Speaker 1: this impacting your confidence socially in terms of relationships, in
Speaker 1: terms of of leaving the house. Um, I wasn't wearing
Speaker 1: tank tops. Um I went probably a decade without wearing
Speaker 1: a bathing suit. I got married, but I didn't talk
Speaker 1: about it with anyone. Despite her silent hardship, Athena meets
Speaker 1: Carlos and feels like she's connected with someone who understands
Speaker 1: and accepts her vulnerability on new levels. But still her
Speaker 1: divide with being open with others deepens. She keeps the
Speaker 1: severity of the pain from her close friends and family.
Speaker 1: Looking back, her sister regrets missing the chance to share
Speaker 1: comfort and understanding with Athena. I wish I would have known,
Speaker 1: but I didn't um And you know, you don't have
Speaker 1: to live in shame and in fear. Athena's symptoms were
Speaker 1: as painful as they were insidious. For years to follow,
Speaker 1: she managed the constant irritation and persistence of her painful
Speaker 1: lumps and lesions, But suddenly her focus changes. When Carlos
Speaker 1: becomes very ill, Athena is about to face a new
Speaker 1: fear that will desperately renew her drive to finally get
Speaker 1: a proper diagnosis and treatment. This is now when I
Speaker 1: have to go to a doctor because I have a
Speaker 1: husband at home whose life is depending on me taking
Speaker 1: care of him, and I don't want to give him
Speaker 1: anything infectious. We'll be right back with Symptomatic, a Medical
Speaker 1: Mystery Podcast. Now back to Symptomatic, a Medical Mystery Podcast.
Speaker 1: Athena Jarbellini spent over a decade learning to cope with
Speaker 1: and justify the constant pain and inflammation that she was
Speaker 1: led to believe was caused by poor personal hygiene. Despite
Speaker 1: a tireless hunt for improvement and relief. But as her
Speaker 1: husband started to face a cluster of health issues, her
Speaker 1: concerns for her own health as his wife, advocate and
Speaker 1: caregiver were coming to a head. Carlos had gotten very sick,
Speaker 1: very rapidly, and required a severe appendectomy. He was in
Speaker 1: a lot of pain and stubborn, so I didn't get
Speaker 1: to the doctor right away, but for about a year
Speaker 1: all of the consequences. He was a diabetic and so
Speaker 1: it got reinfected a couple of months later. You know,
Speaker 1: they were pumping them with so many antibiotics that it
Speaker 1: sent him into diabetic rhytnopathy, and so he had eye
Speaker 1: surgeries and like it was just a whole series of
Speaker 1: medical events. At that time, I was a hospital wife
Speaker 1: for the most part. Now her spouse's main support system,
Speaker 1: Athena's health issues quickly took a back seat. It wasn't
Speaker 1: until she was concerned about putting her husband at further
Speaker 1: risk that she decided to face the concern she was
Speaker 1: letting loom in the background of her everyday life. In
Speaker 1: our apartment, I kept a near sterile environment so that
Speaker 1: he wouldn't get an infection again. But I remember one
Speaker 1: time in one of the hospital elevators, I saw this
Speaker 1: poster for MERSA and I thought, it kind of looks
Speaker 1: a little like what I have. For those not familiar,
Speaker 1: MERSA is a cause of staff infection that's difficult to
Speaker 1: treat due to resistance to some antibiotics. So I go
Speaker 1: home and I look it up and I'm like, kind
Speaker 1: of does but not really, but maybe. So this is
Speaker 1: now when I have to go to a doctor, because
Speaker 1: if I have something infectious, I have a husband at
Speaker 1: home whose life is depending on me taking care of him,
Speaker 1: and I don't want to give him anything infectious or
Speaker 1: you know, cause him to get even more sick. With
Speaker 1: a susceptible husband relying on her care, Athena decided she
Speaker 1: could no longer risk letting her so called lack of
Speaker 1: hygiene and endanger his life any further. So Athena went
Speaker 1: back to the doctor for the first time in seven years.
Speaker 1: So the first doctor visit that I went to, the
Speaker 1: doctor takes a look at it and says, it's not mersa,
Speaker 1: it's mercin, which is another some sort of infection or whatnot.
Speaker 1: But he gives me a prescription and he says, if
Speaker 1: this doesn't clear up in five days, come back. So
Speaker 1: this was an urgent care that I went to write,
Speaker 1: and one that had a lot of hours and a
Speaker 1: lot of different doctors, was really busy, large practice, And
Speaker 1: so I went back in five days because nothing happened
Speaker 1: with it, right, no noticeable difference, no noticeable change. It
Speaker 1: was exactly the same as it was before. But this
Speaker 1: time I got a brand new doctor. And I always
Speaker 1: like to joke and like, give the duke, how is
Speaker 1: a reference? He looked so young, he was a baby,
Speaker 1: and I had just probably graduated medical school and you know,
Speaker 1: I just got a more up to date education. And
Speaker 1: so he takes a look at my armpit and he says,
Speaker 1: that's not mercia, that's hydrodenius superitiva. And I looked at
Speaker 1: him and said, hydro what what can you repeat that?
Speaker 1: What did you just say this was? And he gives
Speaker 1: me this hand out and he says, this is what
Speaker 1: it is, you know a little description of it, and
Speaker 1: you need to go see a dramatologist and sends me
Speaker 1: on my way. I went home and I googled. Some
Speaker 1: of the images looked exactly like what I had, and
Speaker 1: I knew, yes, this is it. This is definitely what
Speaker 1: I have. But I gotta tell you, ten twelve years ago,
Speaker 1: Google was not kind to this disease at all. I
Speaker 1: was horrified at what I saw. Hydrogenitis superativa or HS
Speaker 1: is a chronic skin condition. It's an auto inflammatory disease,
Speaker 1: meaning the immune system attacks the skin cells, causing inflammation
Speaker 1: in those areas. Dr Kirby, an associate professor at Penn
Speaker 1: State Health who was treated and advocated for HS patients
Speaker 1: her entire career, helps explain HS and its symptoms. So
Speaker 1: HS or HydroD Nitis superativa, which is quite a mouthful,
Speaker 1: which is why we say HS first and foremost, is
Speaker 1: a inflammatory condition. And I really emphasized that because it
Speaker 1: looks for all the world like an infection. Because let's
Speaker 1: say we got an injury. Our immune system reacts to
Speaker 1: that and wants to wall it off and protect the
Speaker 1: rest of us, So it makes it red and puffy,
Speaker 1: and the chemicals that are released make it painful or itchy. Well,
Speaker 1: the same immune system that reacts to foreign objects or
Speaker 1: bacteria that way is now just overactive and it seems
Speaker 1: to focus in on the hair follicle for reasons we
Speaker 1: don't totally understand yet causes all of those same reactions,
Speaker 1: but there's no infection. It's red, it's puffy, it's swollen.
Speaker 1: Sometimes it's so inflamed in our immune system is so
Speaker 1: powerful it actually causes the skin to break open, so
Speaker 1: ulcers form scarring happens. And it's usually in folds of
Speaker 1: the body, so under the arm, under the breast, in
Speaker 1: the fold of the leg, on the genital area, the buttocks.
Speaker 1: HS was once seen as a rare disease but has
Speaker 1: now been found to be much more common today. Between
Speaker 1: one to four percent of Americans suffer with HS, and
Speaker 1: despite affecting almost thirteen million people in the U. S Alone,
Speaker 1: HS is still commonly misdiagnosed and missed by doctors. Dr
Speaker 1: Kirby explains why the common symptoms often go overlooked. You know,
Speaker 1: it's almost acne, but in the wrong areas for acne,
Speaker 1: especially in the US, because we shave as women very
Speaker 1: frequently under the arms and in the groin. Again, we
Speaker 1: presume it must be because of something we did. Though
Speaker 1: there's a lot of new research and treatments rapidly emerging,
Speaker 1: HS is still very poorly understood, especially within minority communities.
Speaker 1: For example, HS is found to be more frequent and
Speaker 1: severe in black communities than in other racial and ethnic groups,
Speaker 1: so the emphasis on widespread research, education, and advocacy is key.
Speaker 1: Dr Kirby helps explain in what this disproportionate effect of
Speaker 1: HS on minority community says about understanding the condition. Why
Speaker 1: are some populations of people black or Hispanic female versus male.
Speaker 1: We don't quite understand why that's the case, but whenever
Speaker 1: we see that kind of a difference, it means there's
Speaker 1: something to look for. UH. People with Down syndrome are
Speaker 1: also more likely to have HS, so trying to understand
Speaker 1: why those things are associated helps us understand why it
Speaker 1: just is maybe happening in everyone and helps us to
Speaker 1: then treat it. I just have to say right out
Speaker 1: of the bat, so I don't forget. I have so
Speaker 1: much hope, so so much hope, And I don't think
Speaker 1: that that is always a message that people here when
Speaker 1: they search HS or here about HS. But there is
Speaker 1: so much coming y'all. The growth in therapies is faster
Speaker 1: than anything I've seen. Now, given the opportunity to tackle
Speaker 1: exactly what was at play for so many years, ATHENA
Speaker 1: is determined to connect her symptoms to real solutions, finally
Speaker 1: finding a specialist to help treat the pain and include
Speaker 1: her in a clinical trial at the Penn State Hospital.
Speaker 1: Athena was slowly coming to understand her options. Carlos continued
Speaker 1: to struggle with his own health issues, but he remained
Speaker 1: optimistic about Athena's journey learning to live with her HS.
Speaker 1: I had gotten an email from Penn State saying that
Speaker 1: they were having a support group for HS, and I
Speaker 1: was like, I don't really know if I want to
Speaker 1: go to this, you know, talk to my husband about it.
Speaker 1: I didn't go to like the first two meetings because
Speaker 1: I was like, I don't know. I just a little afraid. Um.
Speaker 1: And then he wasn't nudging me to go, and he
Speaker 1: was like, just go to one. If you don't like it.
Speaker 1: You don't never have to go back, but just go
Speaker 1: to one meeting and see what it's about. And I went,
Speaker 1: And I have not stopped to the point now where
Speaker 1: I am the president of the organization that hosts these meetings.
Speaker 1: What what did that open up for you? Emotionally? It
Speaker 1: took the isolation factor away, and it helped me start
Speaker 1: to feel more normal, right so hearing other patients tell
Speaker 1: their stories and they weren't exactly the same as mine,
Speaker 1: but there were similarities, and there were a lot of similarities.
Speaker 1: Hearing that made me feel more human. It made me
Speaker 1: feel less bad about myself. You know, my floor activity
Speaker 1: always tended to pick up right before my cycle, my
Speaker 1: menstrual cycle, and so hearing other girls say that as well,
Speaker 1: like just starting to understand that a lot of the
Speaker 1: disease mechanisms that we're going on with my body were
Speaker 1: happening in other people. And then hearing, you know, learning
Speaker 1: about how they cope with it mentally and physically. Through
Speaker 1: Hope for HS, an organization that supports patients and families
Speaker 1: who are affected by HS Diena found ammunition to fight
Speaker 1: her symptoms. For so long, the widespread lumps, pain and
Speaker 1: scarring only ignited very real emotional pain and stigma, But
Speaker 1: through her work with the organization and her new friends,
Speaker 1: Athena was building a larger network of support for herself
Speaker 1: and connecting the community with rapidly growing solutions, including expert
Speaker 1: researchers like Dr Kirby and I remember the first real
Speaker 1: impactful experience I had with her. She asked me to
Speaker 1: come in and do an interview with her, and it
Speaker 1: was super early in the morning. We were the only
Speaker 1: ones in her office, and she asked me a question
Speaker 1: right about how this disease affected, um my, my intimate life,
Speaker 1: and I just paused, right, and I'm like trying to
Speaker 1: hold it together because I have never admitted this to myself,
Speaker 1: to my husband. I wouldn't allow my thought processes to
Speaker 1: go there, you know. And I'm frozen. And she very
Speaker 1: kindly takes a box of tissues and slides it across
Speaker 1: the desk and the tears just opened. Um that was
Speaker 1: when I knew I was in really good hands with her.
Speaker 1: As Athena discovers a growing community of people who understand
Speaker 1: her experience and an arsenal of answers to reprioritize comfort
Speaker 1: in her day to day life, Athena is faced with
Speaker 1: an unimaginable horror in her personal life. My husband passed
Speaker 1: in May of two thousand and twenty. UM. He was
Speaker 1: a diabetic and he went into kidney failure and so
Speaker 1: he actually survived cardiac arrest twice. They were able to
Speaker 1: get him back, but after a couple of days in
Speaker 1: the hospital, we had we had to take him off
Speaker 1: of life support. I'm so sorry. Yeah, he was a
Speaker 1: forty We were married two days shy of eleven years
Speaker 1: when he passed, and we were together fifteen years old too.
Speaker 1: Other he was always my encouraging person, like he was
Speaker 1: my constant safe place. Carlos lived with me, and I
Speaker 1: couldn't hide what was going on like he saw it all.
Speaker 1: He saw me throwing products on my HS that would
Speaker 1: make me scream like you know, he saw it all
Speaker 1: and he loved me through it all. After Carlos is passing,
Speaker 1: the HS community became more important than ever as Diena
Speaker 1: found herself channeling her grief into a new sense of purpose,
Speaker 1: propelled by her husband's memory. He was actually at the
Speaker 1: first speech that I ever did in New York. He
Speaker 1: was really supportive. As I started to travel as an advocate,
Speaker 1: we found out that kind of by accident, that I'm
Speaker 1: a really good public speaker, and so I started writing
Speaker 1: speeches and giving speeches that they would ask me to
Speaker 1: go to these conferences and I would start speaking, and
Speaker 1: he was always such a champion of mine. Dr Kirby
Speaker 1: is another of Athena's champions. In front of hundreds of doctors.
Speaker 1: Athenis shows up, she talks through her story. She is
Speaker 1: the only person who gets a standing ovation. Just people
Speaker 1: are roaring. The clapping is so loud. It was just incredible,
Speaker 1: and it made me realize that we sometimes have so
Speaker 1: little time in the room with somebody that we forget
Speaker 1: the story behind the person with that condition. Elizabeth is
Speaker 1: also pretty proud of her younger sister. You know, we
Speaker 1: talk a lot about people with resilience, self determination. You know,
Speaker 1: she's somebody who's she's not gonna take it going down
Speaker 1: and she's not going to quit. So I think that
Speaker 1: spirits wonderful and also kind of envious because she travels
Speaker 1: like everywhere all the time. So I'm like, man, I'm
Speaker 1: so jealous to go to Dallas, to go to Florida.
Speaker 1: I don't think there's ever going to be a single
Speaker 1: pill that I take that's gonna magically turn this off.
Speaker 1: The operating theory is joining medical and surgical treatment together
Speaker 1: to manage this disease. I've had a total of four
Speaker 1: of those procedures what they call a staged excision, and
Speaker 1: so I still have quite a bit of HS left
Speaker 1: on my body. Um, I want to get it to
Speaker 1: a very very manageable state. And now that I have
Speaker 1: the proper care and the proper avenues for that, I'm
Speaker 1: really hopeful for it. But there's there's a lot of
Speaker 1: patients that are not where I'm at, and we need
Speaker 1: to get them there because so many people are suffering
Speaker 1: in silence. Yeah, and now I'm fighting for these patients
Speaker 1: who are still somewhere in that seven to ten year
Speaker 1: road of diagnosis, who are suffering immensely, who are paying
Speaker 1: big time consequences for something that their body is doing
Speaker 1: to them. What do you want other people who may
Speaker 1: be struggling in silence or without a diagnosis yet in
Speaker 1: terms of HS, what do you want them to know?
Speaker 1: It's not your fault. It's not your fault. It's not
Speaker 1: your fault. It's not your fault. I can't emphasize this
Speaker 1: is enough. This is something that your body does. And
Speaker 1: I know that if you're out there listening right now
Speaker 1: and you feel really bad about your body, I'm really sorry.
Speaker 1: There's a medical reason for what is going on, and
Speaker 1: you have a medical condition that requires medical care. It's
Speaker 1: not something that you are doing to your body. This
Speaker 1: isn't an unknown form of self sabotage or anything like this.
Speaker 1: Your body is sick and you need care. Athenis story
Speaker 1: is of both extreme adversity and moving resilience. Through the
Speaker 1: education and advocacy of her work today, she's gone on
Speaker 1: to build priceless relationships and lasting change for the larger
Speaker 1: HS community. It's with these peers and through the meetings
Speaker 1: that Athena has found new hope for the future, and
Speaker 1: she embraces her new role with enthusiasm and purpose. My
Speaker 1: name is Athena Gearbolini, and for fifteen years I struggled
Speaker 1: with disease known as hydrogenitis supurativa. To find out more information,
Speaker 1: visit the HS Foundation at HS dash foundation dot org
Speaker 1: and Hope for HS at Hope for HS dot org.
Speaker 1: On the next episode of Symptomatic, we heard the story
Speaker 1: of Zach Dobek, and eleven year old who loved pizza, sports,
Speaker 1: and going fishing with his dad until an incident at
Speaker 1: a baseball game changed his life forever. If we had
Speaker 1: said yes, like the honest to God truth is that
Speaker 1: I think he would have died in that bed that
Speaker 1: night as an illness quickly takes hold and wreaks havoc
Speaker 1: on his body. It's a race against the clock to
Speaker 1: figure out what's happening and to save Zach's life. Symptomatic
Speaker 1: a Medical Mystery Podcast is an original podcast from I
Speaker 1: Heeart Radio. Our show was hosted by me Lauren Bright Pacheco.
Speaker 1: Executive producers are Matt Romano and myself. Our EP of
Speaker 1: post Production is James Foster. Our producers are Sierra Kaiser
Speaker 1: and John Irwin.